Transitioning from a Regular Life to one with an Invisible Illness

Tag Archives: lack of movement

About a month ago, I started using an activity tracker called a FitBit to try and help me increase my movements, so that all my muscles don’t begin to atrophy. I have been ill for 4 years and my body is starting to experience problems because of the lack of movement.

I have approached this project like a science project, but unfortunately I have not been able to make significant progress in increasing my energy or movements. While I have been able to prevent crashes (which is a major accomplishment in itself), I have not been able to do much more with my body than prior to the purchase of the FitBit.

So this afternoon, I am going to begin Physical Therapy (PT) again, and see if I can get some help in limbering up my muscles and easing the pain. I fear PT as it is a big strain on my body and sometimes as a result of it, I do crash, but I am hopeful that today that won’t happen. I am looking forward to the heat treatments, the neck stretches and the electronic stimulation machine.

Physical therapy brings with it a whole slew of emotional stuff too. Going to the office, most of the people I see have specific injuries that they are treating: broken arm, torn ligament, knee replacement. Their therapies are targeted to a specific body part, that will improve after a specific time period, with repeated therapies. Me on the other hand, not so lucky.

I have been going to this therapist, on and off for 3 years now, and really haven’t improved. In fact, everytime I go for an evaluation, my movements are more restricted and limited. All of these things are really opposite of giving me encouragement, but not doing them is much worse.

So today, I will again start PT and hope that I too will improve, just like the other patients in the rooms on either side of me are hoping. I have just as good a chance as they do, right??

A few days ago I mentioned that I was just purchased a FitBit and was going to begin tracking my steps. My project has begun and I have been wearing the FitBit for a week and have begun to depend upon this little handy gadget to help me monitor and pace myself. Since I have been wearing it, I haven’t had a body crash and I can stop myself before it happens. I am pleased with this aspect of the tracker, in that it is preventing me from going beyond my current limits.

During this past week, I have averaged between 1 and 1.25 miles for the day. At my height and weight, that is between 2400 and 3000 steps spread throughout my day. I can only walk 250-300 steps at a time, so this means that at the most I can walk 300 steps an hour, if I am up 10 hours a day. This is not very many steps, since going to check my mail uses up 150 steps and walking from my front door to my bedroom is about 30 steps.

For all you healthy people, think about it. How many steps does it take you to go from your house to the subway, or walk from the train station to your office? Some people may use up my total step count for the whole day before their work day even begins.

Maybe now my friends who don’t understand my limits, will start to comprehend how restricted I am and when I say I am out of steps, they will “get it”.

I have always been a strong person, emotionally. I don’t fall apart easily, I don’t cry at the drop of a hat or struggle with depression. I take things in stride and deal with situations as they occur. These personality traits have served me well but how do you stay strong when your body has a mind of it’s own and is falling apart even when you are treating it with all the respect you possible can.

Sometimes I feel like Mr Potatoe Head, and that my various body parts are falling apart and need to be put back together again. Yesterday I read another blog about a woman with ME dealing with this same situation and it struck a big chord because this is something that I have also been struggling with. Aside from all the standard issues and problems that accompany Fibromyalgia and Chronic Fatigue, I am also now dealing with other things that are happening to my body as a result of no physical exercise and limited movements.

I am gaining weight, I have elevated cholestrol and triglyceride levels and have also developed heart problems. All of these things at the present moment are being attributed to lack of movement and exercise. But how can you exercise when you are in constant pain and can’t stand for more than 10 minutes before your body feels like it’s going to collapse. How can I walk around the block, when the most steps I can take at one time is 300 and then I feel like I’m going to collapse.

I am a very logical person and started thinking about this as a science project. I need evidence, hard cold facts in order to try and get myself moving alittle more without causing a crash. I recently purchased a fit bit activity tracker and I am trying to figure this out. Can I move more, if I spread out my movements equally over the course of a day? Can I walk 600 steps if I do it over the course of 2 hours and not in one 10 minute walk?

While regular healthy people are occupied with normal life issues about getting children ready for school or planning a last minute summer getaway or inviting friends over for a holiday barbeque, I am consumed with how to extend my steps and stop my muscles from continuing to atrophy.

I never won a science project at school, but my current science project has larger stakes attached to it and the difference between winning and losing is quite costly.